MS Survivor, Inappropriate Mother, and a Daily Quest for Reasons to Laugh and Smile

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Month: March 2017

Just because you have a chronic illness doesn’t mean that life stops. It may feel like your’e wading through a puddle of treacle without any wellies but, it doesn’t stop, honestly!

Sometimes, trying to look good can be challenging when you have multiple sclerosis, especially when you are feeling crappy, but I’m up for the challenge!

It’s been a long standing joke between MFH and our children, that I always wore makeup & nail varnish every day – yes EVERY DAY, I wouldn’t even leave home without my lippy on! Why then, should now I have MS be any different?

Having a chronic illness does not mean I have to look like Waynetta Slob!

I think some people often wonder why on earth I would want to wear makeup, “do” my hair and make an effort, if I’m having a crappy MS day and struggling with it. I know what they’re thinking “if you’re really feeling shitty, then you shouldn’t you look like it too” – but I beg to differ!

After a long time of being unwell and more often than not stuck in bed (it’s been almost 18 months since the MS shit hit the preferable fan) you begin to feel like you’re losing your identity and the last threads of the person you used to be.

Now that most of the things that made me feel good as a person have deserted me – there’s only one thing that consistently makes me feel brighter (not better – I always have to point out there is actually a huge difference between the two “B” words!) …Slapping on my makeup, my war paint if you like. If I’m going to fight this bloody illness, I’m damn sure I’m going to look good doing it! (I’ll give it a bloody good go anyway) MS has after all, taken away everything else and it’s not taking my self-esteem, I’m giving a well deserved two fingered salute to MS if you like!

It may seem silly, unnecessary and possibly to some, inappropriate but I don’t give two hoots and it’s something I can still do without help –ooh get me, Miss Independent! God knows what I’d look like if I had to ask MFH to do my makeup – he’d have a good go but the words “dogs dinner” spring to mind!

When I pass a mirror I don’t want to be reminded of how awful I look and feel. I want to say “feeling shitty but looking pretty” Sarah 1 – MS 0 – Woop Woop!

On my worst days, when I feel beyond shitty and MS has backed me into the proverbial corner, it’s looking like the old me that ultimately makes me feel, and dare I say, look better! The “real” me, not the me with a chronic illness, baring down on me relentlessly.

Some days it’s not easy put my makeup on, perhaps my face is uber sensitive or my hands are shaky but the end result is worth it, if only in my eyes. I look in the mirror and I can see a glimpse of the person I used to be.

I’d like to think that people don’t just see me as “that person who’s chronically ill,” Dig beneath the knackered, pain riddled façade and its still me – you hoo!

I’m not trying to hide my distress or disability with makeup, I’m just trying to let the old “ME” shine through, even if just for a fleeting moment.

Now, if you don’t mind I’m going to have a little rant!

The one thing seriously pisses me off, is when MS sufferers are dismissed as being OK and can’t possibly be as ill as they make out, just because they look fine to others – you can be chronically ill and wear make up – get over it!

If ever you’ve been told “Well, you look OK, you can’t feel that bad.” Gracefully remind these selfish tossers that, If you see us looking even a little like our old selves, don’t jump to conclusions about how we are feeling, say something positive and life affirming and remember— “I’M STILL FUCKING ILL AND GOING THROUGH HELL”! We all wear some sort of battle armour to fight the rotten bugger, MS and some of us MS warriors, wear our war paint to face the enemy head on!

Don’t get me wrong, some days (more often than not) my tormentor – MS, wins the battle of wills and I can’t summon up the energy to “do” my make up and hair – so what, who cares – I just avoid mirrors and people!!

My husband had insisted if we were to get a dog it had to be “A Proper Dog” not a handbag one! He didn’t want to be seen walking anything small and fluffy, he wanted a big butch one, but then Archie came into our lives and he’s the light of our lives and is fussed and generally love-bombed by all who meet him.

Archie is the doggy love of my life.

My MS is a little easier to bear thanks to a tiny ball of white Westie fluff called Archie, he’s my therapy dog, my reason to laugh and smile. He knows when I’m having a bad MS day and believe it or not having him snuggle up next to me eases the pain; who needs medication when you have a spoon full of Archie. Just looking at his cute little face makes me smile. A non-dog person would not understand all the fuss – I say poor them!

There is a saying “Your dog is the only thing that loves you more than it loves itself.”. It’s so true. No matter what you do or where you go, he’s always there wagging his tail and and ready to play

As an MS survivor, it’s important to get some exercise. Archie and the old girl are always ready to go walking. I don’t always have the energy but It’s nice to have an exercise buddy when I do!

Our lives revolve around Archie. If we go out, we have to be back after a couple of hours because of Archie, he’ll miss us too much! If we go away, he can’t possible go into kennels, he has to go to a doggy hotel. Archie is also my husbands constant shadow and he sticks to him like Velcro, you can’t tear them apart. He can’t even go to the loo without his faithful fiend! I think Archie must know the “Police” song “every breath you take, every move you make, every step you take, Ill be watching you” ha ha!

I often hear MFH whisper “are you ok – do you want a cuddle” and my heart melts and I reply that I would. I then feel deflated when he says “not you, I’m talking to Archie”

Archie loves watching TV, not just looking at the screen, actually watching what’s on and is mesmerised by David Attenborough, 101 Dalmatians and of course The Super Vet!

We tried setting rules: He will absolutely NOT be allowed on the furniture. He will NOT be allowed to sleep in the bedroom. He now rules the sofa and sleeps on our bed every night, in fact we often wake up with him between us, head on pillow.

We all love hugs don’t we? On our lowest days a hug from a loved one is comforting, special and reminds us that love, actually is all around us.

To an outsider THE MS HUG sounds like something warm and fuzzy – but they of course haven’t experienced it!

The MS Hug is a rotten little bugger – it sneaks up behind you and takes you by surprise as it wraps its spiky arms around your midsection and that sharp intake of breath you take only tightens its grip. By the way, which sadistically cruel bastard thought THAT would be a good name for something that can feel like a bloody boa constrictor squeezing the life out of you?!

The MS hug is quite a common symptom of MS but is not known to lesser mortals.

Here’s the best way I can describe it…It’s an intensely tight feeling, like something is clasping around your chest but it can also grab you around your hand, foot or worst of all, your head. It squeezes so tight around the chest that it’s really difficult to breathe. Sometimes, it hugs you so bloody hard and will not let go not matter how hard you struggle.

I’m no neuro but here’s why…

As with everything associated with MS, it’s all down to nerve damage.The feeling of tightness around your chest can be due to spasms in the intercostal muscles between your ribs (ooh get me!). We also get feelings of mind blowing aching, stabbing, crawling electricity and intense pins and needles. An MS hug is classed medically as a “kind of pain”. Oh, ha bloody ha – a kind of pain, ffs!

Let me tell you something – ’I’ve had three children and kidney stones and MS pain trumps these, hands down!

The first time it happens its a tightening, cramping feeling, unlike anything you’ve felt before. Your mind goes into overdrive and you say to yourself “FFS what it wrong with me now?!” Is it part of MS, or something much bigger?

MS warriors describe it as similar to wearing an old fashioned girdle that’s about 8 sizes to small, except that the tightness is from the inside, not the outside. I have never worn a girdle, but if THIS is what it feels like, I will most definitely give that garment a wide berth!

When I called my specialist nurse in a panic and told her about my unwanted prickly fumble from my constant companion, MS, she laughed a little, which I may add, I found very rude –rotten bitch! (she’s actually lovely by the way) She assured me that my appendix wasn’t about to burst, it wasn’t a hernia, and it wasn’t the early stages of a heart attack –PHEW!

How to deal with the MS Hug

I’m learning to “manage” the pain and other ‘delights” that are part and parcel of the MS Hug. Everyone has their own way of dealing with it but here are a few examples:

Deep Breathing–
Breathe in deeply through your nose and out through your mouth as if you are blowing your cup of tea prior to your first sip ( I tell my family to do this and their standard reply is “ blah blah doesn’t work for everything” -I beg to differ!

Drink something warm–
some people think this can help relax your tightening muscles a bit. It really is true a cup of tea heals all!

Take a Warm Bath–
This is my first port of call for anything that makes me feel like shit, even at 4am. Bath, bubble and lavender oil Epsom salts will loosen that unwanted hug, if only for a little while!

Wear Loose Clothes–
No, I’m not trying to teach you to suck eggs but this is obvious if you feel constricted but still worth mentioning

Massage– Though I have never tried this for The Hug, some people say it actually helps them relax, I prefer my ever faithful electric blanket!

Mind Over Matter–
Easier said than done I hear you cry!, definitely not for me. I think it’s a load of bollocks, but some people believe they can think their pain away – yeah right. Good luck with that one!

I’ve had a few really “bad hug” days. So if you’ve got any more tips on how to handle the dreaded MS hug, I’d love to hear them

Even though I have been lucky (I use that term very loosely) enough to see some improvements lately to my balance and general mobility (I’m getting about with just one crutch now – woop woop!) my newly defined ways of doing things and the almost all consuming wondering what is going to happen next, It seems to be one step forward and two steps back, its not the hokey cokey but it feels like it!

I have had to give up so much of my independence, but I try to not dwell on the what ifs but that doesn’t mean that I don’t get pissed off – really PISSED OFF. I’ve become a hermit, tucked away behind our big front door. The world is out there screaming for attention but most days I have to politely decline its invitation. When I do venture out it’s just to hobble round the green with the dog. I must be hilarious to anyone watching as a struggle to master the art of picking up poo and flinging it in the bin with crutch in one hand and dog lead in the other. I wonder if I get points for determination… just a simple 10 minute jaunt and I’m completely pooped – excuse the pun!

The intensity of MS is physically and mentally incapacitating and it means your life will never be the same again. When I can function properly, I grab the chance to do things, see our eldest daughter and the HM, out for lunch etc but there is a heavy price to pay for escaping the binds of MS for a little while! Under guidance from my specialist, I am taking a break from the treatments for a while as my body rejects all tried so far. It’s a risky move but medication and I are not the best of friends and I’m determined to fend them off as long as I can, so the score today is Sarah 1 – medication 0. Big round of applause please…

ANY improvements in the day to day battle are short lived but truly I appreciate each and every accomplishment and milestone I achieve. Simply knowing what MIGHT happen doesn’t mean it will. Trying to navigate all the bullshit that comes with living with a chronic disease is exhausting.

I have found brilliant support groups on Facebook and learned that getting to know others living with the same shitty disease does not mean joining a pity party, as I once incorrectly thought it would be. No my friends it means finding other like minded souls, to share and support one another. I mentioned “going to battle” and have finally realised that having a BAD ASS group of virtual friends, armed with shit loads of knowledge, is the best way to ensure that I win this fight against MS!

Even on my lowest days, music plays a big part in my daily MS journey, because you can feel so many emotions depending on the tone and the words you hear. Music is good for the soul, so I recommend using it to your advantage and take a daily dose of your favourite tune, Drs orders!

Music is a powerful weapon that can help lift your mood or how you deal with a stressful situation. Find music that makes you feel good, and use it as part of your wellness routine, whether it be laying in bed or slouching on the sofa. It really is true, there is music for everyone!

Every day I try to listen to some music and turn to some of my trusted favorite up lifting songs as another form of therapy – as an escape from living with MS, if only for a while.

I am obsessed with the Justin Timberlake song, “Can’t Stop the Feeling” from the movie “Troll” Its completely addictive, I defy anyone not to smile when you watch him perform at the Oscars https://www.youtube.com/watch?v=H-Iu06b_Nfg Its such a feel good factor song and ILOVE IT! My family will be the first to admit that when I find a song that I like I play it over and over until the next one takes my fancy, it drives them mad!

Iv’e been known to sit sobbing in the bath at 4am when I’m just so overwhelmed with a barrage of symptoms but pop on a little Justin and a sob become a whimper, beats popping yet another pill!

I can’t wave a magic wand an make MS go away, but music really does help.

There have been lots of studies about how your body, mind and soul react to music and how it seems to calm our nervous system down and music therapy can help stimulate the brain and alleviate symptoms of depression, anxiety, and help with memory loss – my memory can remember the words to my favourite song but not where I put my pills!

So, go on – join me and drift off to your happy place with a little music, be it Spa-music, something boppy, jazz or even rap… no one will judge your choice!

Trying to maintain a sense of humour is a big part to surviving any illness. MS is no different. While coping with the disease is frustrating and overwhelming, you can find a dash humour in knowing that others are struggling and laughing along with you.

Laughter DOES NOT make my MS disappear, BUT laughter reminds me that I still find things funny, especially if it’s lavatorial humour. A good giggle doesn’t “fix” anything, but It gives us a little break from it.

Point in fact being – just chatting away to my eldest daughter on facetime, when I asked what the noise in the background was – it sounded like a racehorse taking a leak – turned out it was the HM in the loo and he hadn’t shit, sorry, shut the door. Yep, made me laugh, so that’s one chuckle point to me!

Another conversation that made me chuckle – well belly laugh actually, was when my youngest daughter called me in a bit of a flap to ask “how do you unblock a toilet”? A perfectly normal question I hear you say… It turns out that her flat mate (won’t name names, but you know who you are!) had done a huge turd that was refusing to budge, squatters rights if you please! No matter how many times they flushed it was still there, taunting them from the bowl– I suggested donning a pair of Marigolds and to use a pair of chopsticks to manually eject the offending turd from its resting place, I believe that did the trick! I’m sorry I know its disgusting but I was literally in tears – toilet humour, works every time!

We live in leafy suburbia a place where nothing remotely exciting EVER happens and is mostly filled with the blue rinse brigade. You can image our surprise (and I have to admit, delight) when an anonymous note was thrust through our letterbox in the dead of night, telling us that we had an S&M madam living across the side of our leafy crescent. The note gave chapter and verse about all the activities that were going on behind the seemingly bland curtains, the spankings, the whips and all kinds of weird stuff, it even gave the website of our salubrious neighbour. We thought she was touting for business but it ended with bringing notoriety to our street, so we should all complain to the authorities – very odd but hilarious none the less!

We have a church on on side of the green and S&M on the other, so I’ve invented a new game to while away the hours … the green is surrounded most days with old farts attempting to park their cars ( I did mention that the blue rinsers rule the area) going to church events, yoga, painting and anything, it would seem that involves tupperware boxes of food!

Oh yes back to the story… I have the perfect vantage point to see the comings and goings – are the men going left or right and who looks shifty and furtive when exiting their car – more often than not I’m wrong, they all seem to wear raincoats and carry little bags, so I can’t tell who’s got a yoga mat and who’s got a rubber suit in their bags, but it’s is hilarious when they skulk to the left, hoping no-one noticed – they do say laughter is the best medicine!

MS has robbed me of my sanity but not my sense of humour!

With a good round of chuckles, titters or a guffaw, we can give ourselves a few moments of remission from whatever symptoms are in our way.

Living the dream is not all its cracked up to be but on the whole life was good. We had a house by the coast with two pools, a property business and as it turns out, sunshine 365 days a year. This was fabulous but it masked a lot of my symptoms. When they slowly crept back into my everyday life, my Spanish Dr (Dr Sex as he was known – as every visit he asked if we were getting enough sex and red wine!) did a barrage of tests and it came back that I had Hypothyroidism ( under active thyroid) which explained all my ailments. Medication duly administered. Woop woop – we finally had answers.

How wrong we were! MFH and I can both recall strange things happening to me again, old symptoms flared up, falling over without reason ( no, I was not pissed!), pins and needles, strange pains and freaking everyone out by falling practically unconscious on any given car journey. We thought it was all part of the hypo do dah!

After 10 years, Spain went from boom to bust in the shake of a maraca and we went with it! All the kids were based in England so naturally we headed back to Blighty. Due to the BUST our life had to be downsized but we were all in the same Country so that was a mega bonus.

My 50th year – 2015, was one to remember – my amazing children clubbed together and the circle of 6 headed to Dominican Republic for my birthday treat. Lots of laughter, fun and copious amounts of Pina Coladas for the inappropriate Mother!

Back to reality – MFH was working away from home during the week but all was well, as I had my little bundle of westie cuteness and the old girl to keep me company. Weekends went by in a flash but we got used to it, at our swanky little cottage surrounded by apple orchards. We reverted back to childhood and went scrumping at dusk!

Out of the blue, I had what I thought was a mega flu bug, as all my usual symptoms went into overdrive and then BOOM – the left side of my head and face went completely numb, yet I had the worst pain known to man, or in my case, woman. Electric shock sensations charged over the area continuously, with what felt like a shard of glass being shoved, full force into my ear. The intensity of pain was physically and mentally incapacitating. The slightest touch or breath of wind would make it worse so I became bed/house bound for months, the cause – TRIGEMINAL NEURALGIA. Alarm bells rang for my GP, when my chest and left arm/hand went numb, thus rendering my hand useless and I was rushed in to see a neurologist and have an MRI.

I was expecting to discuss TN treatment but then came those life changing words, forever etched into my memory… oh holy fuck, here it comes…

“YOU HAVE MS”

My 50th year started out as one of my best but ending up being my/our worst.